Thursday, August 23, 2012

The Post-Traumatic Stress of Pregnancy After Special Needs

I haven’t written much about this pregnancy, because it’s been challenging to sort out my conflicting subconscious thoughts into something that would make sense—something that wouldn’t seem too dark (because we are elated to be having another baby) but would also honor the fact that pregnancy is much trickier, psychologically, after having a child with special needs. As I look around my apartment at the newly re-assembled crib, and piles of baby stuff emerging from storage, I think that the time to talk about it has probably come. Exactly seven months ago I found out that I was pregnant.I watched the second line appear on the test with a mixture of excitement, anxiety and disbelief. . . feelings typical of any woman who’s just peed on a stick and is staring at that second blank spot, mentally willing a line to appear and then somehow still shocked when it does.But there was another feeling too, floating towards the top of my consciousness, forcing itself to the surface to pop my jittery, excited bubble of glee . . . it whispered “you know better. Be careful. Don’t get too happy, don’t forget what can happen.”I pushed it down.It said “Don’t set yourself up to be blindsided again.”I tried to ignore it. It said “Don’t expect everything to go well, and it won’t hurt as much when it doesn’t.”I tried to shrug it off.It said “You know better.Don’t forget that you know better.”It was right.I do know better.And not in any sort of wise-beyond-my-years way (well, maybe sometimes, a little) but more in a PTSD way . . . like a driver after a car accident who will never be quite as at ease behind the wheel. I’ve intermittently struggled throughout this pregnancy to find an outlook that made sense and would stick.There were clear, oh so clear, differences between my mentality this time around versus my first “uneventful” pregnancy.

In the waiting room of my obstetrician’s office, I looked at the visibly pregnant women and thought things like “Oh, I hope that this all goes well for you” instead of “Oh, good for her! Another pregnant lady!” Going in for ultrasounds, I walked past the other rooms in use and wondered if someone might be getting life-altering bad news, instead of wondering if someone might be hearing their baby’s heartbeat for the first time.When my screening test results came in (we had all of the run-of-the-mill screening tests, the same as we did with Maya, nothing more and nothing less) as normal (as they did with Maya) I was happy, of course, but reservedly happy, because I now know of several hundred disorders that would never make themselves known in something as simple and silly as prenatal screenings.The first time around I thought that “typical” results were a big, fat “Your baby is perfectly healthy!” stamp on the medical record . . . but over the past few years we’ve seen a truckload of “typical” results, despite knowing that things here are not typical.So I smiled and thanked the doctor and left feeling somewhat relieved for “typical” but when my inner voice said “Don’t let your guard down . . . you know better” I replied “Don’t worry, I won’t.”When I see other pregnant women shopping at Babies ‘R Us, or talking to their friends, or in line at Starbucks, I see them through a bifocal lens of congratulations and trepidation. I smile at them in accordance with the sisterhood-of-pregnant-women unspoken rules, but my inner voice wants to whisper to them, too, to say “Are you expecting everything to be ok? Because it might not be . . . and it will hurt less if you know that might happen.And things will be ok, either way, they really will . . .” but I know that I can’t let that happen.And I wouldn’t have wanted to hear it during my first pregnancy, either.I'm fairly sure that I deliberately didn’t read anything about birth defects or terrible delivery stories or things-that-could-go-wrong . . . because why should I?Why not have a happy 10 months of assuming the best and waiting excitedly?What good would preemptively worrying do me?I wanted to maintain my ignorance, thank you very much.But after having a child with special needs, you can’t un-know.And so, this pregnancy has been different.Oh, it’s been happy, for sure.I’ve watched my body shift and expand, and felt the hiccups and kicks and stretches (which are kind of painful) of this little guy with delight.This will likely be our last baby, and I’m trying to look past the end-of-pregnancy discomfort and savor the alien magic of watching my belly wobble and shift as the baby does his nightly calisthenics.We've picked a name (probably) and have talked excitedly with Maya about her brother.His room has been painted, and over the past two weeks we’ve assembled some furniture and made lists of things-to-buy and things-to-get-out-of-storage.With 6 weeks left until my due date, things are slowly starting to come together, and I’m enjoying the nesting phase and embracing the urge to get my household in order before things get shaken up with the new arrival.I am happy, and I can’t wait to meet this new baby.And I seriously can’t wait to introduce him to Maya.(Also, I can’t wait until I can gracefully get out of a chair again, but that’s a different story.)

But beneath this happy anticipation is also some sort of quiet warning . . . like a low cello note hidden in the background of a composition beneath some joyful, vibrant violin music.It’s just a hum, a quiet “don’t forget”, a reminder to not float away in the bubbly good times because there can always be something.It’s not something that I actively worry about, it’s not something that I even pay much (if any) conscious attention to . . . it’s just a hum, a quiet, constant hum.

I imagine that by the time I check into the hospital and settle in my labor & delivery room that hum will be loud, my nerves on edge, split with both happy anticipation and “what if, what if, don’t forget, don’t let your guard down.”Both sides of the music loud, loud, waiting to see which will drop off in the next few hours, or next few days.When I settled into my hospital bed to deliver Maya, there was no low warning hum.It was nice to be young and hopeful, putting any nervousness to rest with the mantra “millions of perfectly healthy babies are born every day.”I’m sure that I’ll think the same thing this time, but the reassurance that it brings will not be complete. And then the inner voice will start again, with a different message, since the time for warnings will have passed, “It’s time to let go now, to let your guard down.There’s no warning to hold on to now, it’s time to let go and see what the next chapter will bring.” And I imagine that I will listen and surrender, putting the time for wondering aside and embracing our new beginning as a family of four.

17 comments:

Hoping for the best for you all. I read this last entry and am so very moved. You are a true champion to your family and should be proud of all you do. Mothering is never easy and you do it with honesty and grace.

Oh Dana you have done it again sister! Said my thoughts exactly-though articulated much more clearly. I too have those awful things go thru my head when I hear of soneones pregnancy-first-I hope it's a boy, then I go to that place when I remember how nice it was to be naive. I did hear that low him while pregnant with Nolan. It actually still pipes up Avery now and then and he is almost 4. You are right, it's like driving after a car accident. You know its nit likely to happen again but you grip that wheel a little tighter every other trip. I can't wait to hear the news when baby comes! Any chance you might name him gator? Hee Hee. Ps: how is your butt so small? When I'm that pregnant you can't tell my butt from my belly!

First of all, you look awesome. Second of all, I can relate but mostly in a different way. I had a complicated pregnancy with P (lots of bedrest, bleeding, being scared, placental abruption, etc.) But, I carried to term. The week we found out we were pregnant with M (not planned, 2 % chance of getting pregnant on our own) we found out P had a stroke in utero and got her CP diagnosis. I was not elated about M, I was horrified. I didn't want to do it again. And of course M's pregnancy was worse than P's and I had to leave P when I was on hospital bedrest. I envy people who have that blissful pregnancy experience . We are not having any more bio children, not only because something is wrong with us, since we only seem to make sick babies but because it's not worth the risk to myself, to another baby or to leave the girls without a mother. Sigh. I'm only 26. While I in no way want another newborn or to deal with the mystery diagnosis situations we have, I did LOVE being pregnant. I never had a normal pregnancy, or a typical newborn, or a typical toddler. It's something I will have to learn to figure out how to deal with. You write, so well and it sounds like you are doing very well emotionally and mentally preparing yourself, regardless of your past history.

Wow, we are definitely on the same page. I am 31 weeks with my second. What I am MOST terrified of is that I am going to miss so much that first year while I am waiting for milestones to come, or watching and judging her every move to see if there are those "early warning signs" I missed the first time around. I just want to be able to blissfully enjoy her as much as possible without the nagging feelings.

I love following your story. You articulate what I cannot. My first daughter just turned 4 and is very similar to Maya (though it seems that Maya is far beyond our Gia). My second daughter just turned 1 a couple of weeks ago, and is doing great! She is right on track with where she should be, if not a little ahead of the game. I was extremely worried while I was pregnant and for the first few days she was home but then I realized that no matter what her outcome we would be fine. I also took special care to NOTICE everything. All of the little milestones were a HUGE deal, and I reveled in them! Most parents with "typical" kids don't really appreciate the little milestones that are reached. We do. It's been amazing seeing all of differences between my girls and my youngest seems to make her sister work a little bit harder to keep up with her. A little sibling rivalry is good in our case! Plus the up side to it all, even though they can't talk yet, is the love and bond that they share with each other! Keep doing what you're doing, odds are that everything will work out fine!

I could have written this post myself, but you do it so much more eloquently. My son with diagnosed with autism when I was 6 months pregnant. It was like a bad dream I couldn't wake up from. Its taken time, and honestly it does every day, to focus on my 5 month old as his own little individual person and not let my mind go to the depths of the deep dark hole of despair. My best piece of advice would be to not read the developmental books about your newborn. Our pedi knows our story with my oldest son (who is 3) and is really great with keeping us informed on all of the great things that Grayson is doing (5 month old). I wish I was there to give you a giant hug. Please know your thoughts and feeling are completely normal (if normal is such a thing). You are not alone! Thank you for posting, as it helps those of us who are riding this wave with you.

Hi, you have just described my pregnancy exactly! I have a 3 year old with Rett Syndrome and a 3 month old baby, and it is so true -no matter how smooth or complicated the subsequent pregnancy and birth, the magic is not there...... For me, I actually found the first 2 weeks after the birth the hardest, all those hopes and dreams we have for our baby's future, well they are exactly the same as we had for our first daughter, and experiencing the same feelings again was hard, knowing as we do now, just how different her future is going to be from our dreams... but now I am over the whole emotional/hormonal post-natal stage, I am able to enjoy them both for who they are, and seeing the relationship that is developing between them both (while constantly wanting, but being too scared to, compare their development and milestones!)

Dana, I'm so excited and hopeful for you, and so glad to read about this news even though I haven't seen you in a long time! I understand the trepidation ENTIRELY. No matter what, Maya has changed your life, and you will approach not only this pregnancy but parenthood completely differently the second time around. Congratulations and the best of luck!

My SN baby is my youngest so far, but you have perfectly described my experiences with my pregnancies after several losses and then a small for gestational age breech baby. Whether I will be able to manage my stress for a future pregnancy is a big worry for me, to be honest.

I too am due in a 8 weeks with baby #2, after baby #1 has special needs. I know what you're thinking and going through and couldn't have put it better. I didn't read anything about what could go wrong with my first, and I'm not about this one either. Whatever will be will be and I tell people, wish for a healthy baby if you want but nothing matters more than a happy baby. After all of the hospital trips that we have been through and therapy appointments and follow up appointments, I would double it if it means my unborn child will be as happy and loving as my first. (Although I must say I would go a little nuts-o if we had to add the appointments.) Thanks for your thoughts and articulating mine so well.

I too am due in a 8 weeks with baby #2, after baby #1 has special needs. I know what you're thinking and going through and couldn't have put it better. I didn't read anything about what could go wrong with my first, and I'm not about this one either. Whatever will be will be and I tell people, wish for a healthy baby if you want but nothing matters more than a happy baby. After all of the hospital trips that we have been through and therapy appointments and follow up appointments, I would double it if it means my unborn child will be as happy and loving as my first. (Although I must say I would go a little nuts-o if we had to add the appointments.) Thanks for your thoughts and articulating mine so well.

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